Translation to Transform Project

Minneapolis, MN | June 16, 2016

Promising clinical and pre-clinical research on new technologies for intracranial pressure (ICP) monitoring, and pharmaceutical therapies for non-invasive management of CSF production and the prevention of some forms of hydrocephalus is underway. Considering the vulnerability of the hydrocephalus patient population and the dire consequences of not receiving timely intervention, investigators may face considerable barriers in recruiting and retaining patients for clinical trials. Clinical trial design should consider the risk tolerance of patients and families and incorporate outcomes that are important to them, i.e. patient-centered outcomes. Obtaining patient and caregiver input before clinical trials are designed and undertaken will help mitigate potential barriers.

As a first step, the Hydrocephalus Association (HA), with funding from the Patient Centered Outcomes Research Institute (PCORI), developed the Translation to Transform (T2T) Project. The T2T Project brought together medical professionals, researchers, and patient representatives to discuss clinical trial ethics, barriers to clinical trial participation, and patient-centered outcomes.